15 Months

Grief hasn’t been my friend over the last few weeks and it’s plastered all over my face for the world to see. I feel tired all the time, I could fall asleep anywhere at anytime and some days I can feel myself drowning in sadness. The bags under my eyes show the heavy weight of grief I am carrying inside me. I’m forgetting things – Isla’s extra tap lessons in preparation for her upcoming exam, Florence’s after school singing group, payments for school discos and Rainbow/Guides Pantomime trip.

Some days feel so long, almost never ending. And some days whizz by in a flash.

I try to keep myself busy – I find that being out of the house and around other people helps, but it doesn’t ‘fix’ anything.

Nothing can be fixed now and I have come to terms with that, but I need to attempt to paper over the cracks. My Lennon shaped hole will never be filled, not even slightly, however, that the outside of that gapping black hole can be made more colourful and prettier. And only I can do that…..

Last week I came to the realisation that what I am feeling is depression. I know this because I have suffered with depression since Lennon was born. Not severely, but enough to need a low dose of medication to keep my sadness suppressed.

Lennon and I during a long stay on Badger Ward, GOSH.

I arranged to meet our hospice nurse and one of our continuing care nurses for coffee last week and I found talking with them about Lennon and sharing memories helped to alleviate some of the sadness. I could talk about Lennon all day everyday and I find great comfort in doing so. But there aren’t many people who still talk about Lennon. Maybe they think bringing him into the conversation will remind me of what I’ve lost and make me sad. It can’t – there are no reminders, he is forever on my mind and in my heart. Every second of every day.

We speak about Lennon everyday at home and he is still very much a part of our lives. Our house is full of reminders and happy memories. Florence often sits in his wheelchair at the table to eat dinner and Isla squeezes her size 3’s into his tiny bright Yo Gabba Gabba socks – I love hanging them on the washing line! And as Autumn changes to Winter Ian often reminisces about his long walks around the village with Lennon in the cold wind.

Lennon loved the wind.

Bike ride to watch the baby ducks on the pond in the village.

Florence often asked where Lennon is – A question I still cannot answer as I do not know. I tell her he is sliding down rainbows somewhere, always watching and guiding us. How can I explain life after death to a 5 year old when I don’t understand it myself…..?

Florence loved to steal Lennon’s books!
Isla helping Lennon to draw.

Lennon’s beloved respite centre Nascot Lawn is due to shut its doors next week and therefor the campaign to save it has now ended. Another chapter of Lennon’s life closed forever.

Now I’m focusing on building a legacy for Lennon. I assisted in compiling the Together for Short Lives report – End of Life Care: Strengthening Choice and I recently spoke at the Hertfordshire Rapid Response Conference, both of which I thoroughly enjoyed. I’m due to share my story with student Children’s nurse next month at Hertfordshire University and I’m looking at other ways in which I can share the up and downs of Lennon’s life in order to make a difference to children, families and professional practice. The only way in which people can be educated on life with a complex child is from parents and children who have lived experience. I want to share Lennon with the world! Plus It’s good therapy for my mental health.

Telling my story at the Hertfordshire Rapid Response Conference, October 2018.

It’s a way for me to keep a part Lennon alive – his story will never die.

Lennon and Mummy x

In a Different Life

When I was pregnant with my first child, I imagined all the experiences I would have with my son. As I’m sure all expectant mothers do. Not just the first few weeks and months, but also the years ahead.

Breastfeeding, cuddles, learning to walk and ride a bike.

Trips to the park, standing on the sidelines watching him play football or rugby, and waving him off for his first day at Secondary School.

Little did I know that my life with a first born child would be so different.

Different.

Not worse, in fact sometimes better – And certainly much more interesting and fulfilling in ways only a Special Needs Parent could possibly imagine.

Tube feeding, cuddles with wires everywhere frightened you would knock something that was keeping your baby alive. Bringing your baby home for first time, aged 6 months.

Lennon’s first day at school.

Learning to walk in a frame aged 5, fundraising for an adapted wheelchair bike.

Spending endless days, weeks, months inside a tiny hospital room.

Today, in the life I imagined myself leading this time 12 years ago, Lennon would of started Secondary School. I would be straightening a wonky tie, taming messy hair, shining a pair of smart black shoes and watching an 11 year old out of the front door.

That day was never meant be.

Instead, I would of been administering a ton of medications, changing dressing, emptying stoma bags and packing medical equipment and supplies ready for the day ahead. I would of smothered my gorgeous boy with kisses and cuddles before pushing him out of the front door in his wheelchair and onto the school bus.

Trying to get a photo of them all together always took many attempts….
Finally!

But I am not doing that either.

Instead I am waving off only 2 of my 3 children for their first day of the school year. Florence into year 1 and Isla into year 6.

If you told me I could have Lennon back, even for the shortest time, and I could choose between the Son I imagined all those years ago, or the Lennon we were given, I would never choose the life that I imagined and dreamt of.

I would always choose the Lennon I know and love and our extraordinary life.

Lennon having fun at school, his favourite place.

There will be many Special Needs Parents sending their children off to school this morning wishing that they were on their way to a mainstream secondary school.

I’m sat here wishing my son was alive and that I was standing at my door waving him off on the school bus to his severe learning disability school, watching his beaming smile and flapping arms as the bus turns the corner at the bottom of my road.

The last ‘First day of school’ photo of all of my children x

1 Year

Well, I won’t lie, it was a really tough day.

In all fairness it was always going to be.

We all feel the pain of the last year and no matter how hard you try to forget the really bad moments, they still appear in your mind like an old fashioned showreel.

I forced myself out of bed and after a long, hard cry we ventured out of the flat to spend the day at the beach. It was a day Lennon truly would of enjoyed. The girls spent most of the day in the sea and building sand turtles fittingly named ‘Len’ and ‘Len Len’ after their brother.

In the evening we went out for a meal and sat by the harbour, eating ice creams and reminiscing about all the good times we shared in Torquay as a family of five.

As the day went on everyone’s mood slowly improved – helped somewhat by the sand, sea and sun. And the memories of the last time we were all together in Torquay – Lennon shrieking and arm flapping with delight whilst watching the fairground rides, and how thrilled he was being pushed out to sea in his dinghy. He loved the water and it seemed most appropriate that we spent the day by the sea.

We did struggle to decide what to do. People asked us what would we do on the anniversary of Lennon’s death?

To me, anniversaries mark happy days. Days to remember positive life events: a wedding anniversary for instance.

A celebration.

The day Lennon died is not a day to celebrate. August the 3rd will remain the saddest, most traumatic day of my life and I do not wish to celebrate the day my brave little soldier died.

If I could of slept through that day, I would of.

Ian has been amazing since we arrived. He has been cooking, making sure we are all fed and taken over the responsibility of the girls. I have barely lifted a finger.

It’s just what I needed. I don’t have enough energy or gumption to organise a p@£s up in a brewery at the moment.

Everything feels numb.

I didn’t need to ask him to take over, he simply did.

It’s hard to say whole year has passed, the words get stuck in my throat. Mainly because it doesn’t seem possible that my darling boy has been gone for 366 days now.

The fog of grief is slowly lifting, but the pain is still there. A constant reminder of the missing piece to my jigsaw.

Almost a year …

The clock carries on ticking and life moves on.

A life without Lennon.

Whatever I do, it is always with Lennon at the forefront of my mind. He is still my first thought when I awake to a new day and my last thought before I fall asleep.

Sleep has not been my friend for the last few weeks though. I lie awake having flashbacks of the days leading up to and after Lennon’s death. When I finally do fall asleep I toss and turn and wake up crying.

—————

Quite a lot has happened over the last couple of months.

I have a part time job for the NHS in Urgent Care. It’s only 10 hours a week at the weekends but I have found it to be a welcome distraction from my grief – I don’t feel so sad when my mind is occupied.

My blog won a BAPS (Bloody Awesome Parents) award for ‘Best Newcomer’. The very gorgeous Gethin Jones presented me with my award and I cannot tell you how surprised I was! Ian and I had a lovely evenings amongst families who also walk a similar path to us.

Gethin Jones presenting my award and me trying my best to hold my tears in!

I assisted in delivering a petition to Number 10 on behalf of The Disabled Children’s Partnership.

Delivering The Disabled Children’s Partnership’s short breaks petition to No10 Downing Street.

I met with Nadhim Zahari, the Minister of State for Children, Young People and Families. I was lucky enough to talk to him about the lack of care for complex children who fall in the gap between health and social care. And how there needs to be clear guidance on which body is responsible for them.

Meeting Nadhim Zahawi at Portcullis House, Westminster.

Isla won ‘The Hinton award’ at school – an award given to the KS2 pupil who has shown real grit and determination to overcome challenges throughout the year. I am overwhelmingly proud of her, she’s had such a tough year.

Isla with her award.

Two of our Nascot Lawn families featured on BBC1 Panorama – the programme and an online version. It made difficult viewing for Ian and I. We were taken back to the extraordinary life we led with Lennon and it was a stark reminder of just how different and ordinary life is now.

Lennon’s school held a memorial morning for Lennon and unveiled the most perfect art display dedicated to him and his love of swimming. The whole morning was so well thought out and planned, with Lennon’s teachers singing and playing guitar – Lennon loved it when Nathan played his guitar! It felt comforting to return to Lennon’s favourite place and see all the staff again. I was so pleased to hear that they still think and talk about Lennon everyday, he is still very much a part of the school.

Lennon’s memorial at Amwell View school, at the entrance to the swimming pool.

The amazing charity Post Pals invited us on a weekend away to Chessington. It was a fun packed weekend and the girls thoroughly enjoyed it. We had the most amazing experience feeding giraffes and discovered that Florence is almost as much of a thrill seeker as her brother after insisting on going on the Vampire ride multiple times!

Feeding the giraffes at Chessington World of Adventures.

Better Removals are naming one of their new removal vans ‘Lennon’ in memory of our little soldier.

And I have given a few talks on my life and experiences as a Carer and mum to Lennon and really enjoyed it – I could talk about Lennon all day everyday!

One of the slides I use in my presentations to show the importance of communication between professionals.

—————

Blogging and campaigning for Nascot Lawn and disabled children has given me a purpose since Lennon died. I would give anything to have my old life back with him. That wish will never come true, but the next best thing is to share Lennon’s experiences in life, with the aim of educating others to help improve the lives of children similar to Lennon.

Lennon’s journey can educate countless people and change so many lives. Now he is not here, it is my job to share Lennon’s story and help others to learn from him.

A future without Lennon feels totally unbearable to me, despite not seeing him for almost year. But I need to find a way to survive the rest of my life, and the only way that seems possible at the moment is to keep Lennon’s memory alive in any way possible.

I still have moments when I wish that I could ‘jump off’ this ride, just for a minute to catch my breath. This year has gone way too quickly. Tears spring to my eyes and a lump appears in my throat at the mere thought of it being a whole year since Lennon was encapsulated inside our little family.

This week we will travel down to Torquay as a family of four, but we know Lennon will be with us in spirit. Our last family holiday was summer 2016 in Torquay – I’ll never forget how much Lennon enjoyed it and how much fun we all had. The weather was glorious and we managed to get Lennon into the sea. Believe me it wasn’t easy and we narrowly avoided an adrenal crisis from the cold water but it was worth it just to have those memories to hold on to now.

Lennon enjoying the sea.
Full dressing change in his wheelchair!

Ian and the girls don’t want to be at home on the anniversary of Lennon’s death. They don’t want to remember the hurt, shock and deep sadness we felt in the weeks after Lennon died. They don’t want to return to the darkness we all endured.

I have to respect their wishes and needs. The next best place to home is Torquay and the warmth of all the happy memories it holds. Lennon was always so content and relaxed at the coast. His little face always glowed in the sunshine.

I have no expectations for the day. I hope to be able to get out of bed, dressed and out of the flat and give my girls a good day.

A day that Lennon would of enjoyed.

A day we can reminisce over the amazing memories we have of Lennon, our little soldier.

Family of Five, Always.

The hidden depths of the NHS

I have been asked a few times now to write a blog post to celebrate the NHS turning 70. If you have stumbled across my blog before you will know that without the NHS Lennon would not of survived much past his birth.

Lennon at 7 days old.

I’ve thought long and hard about which of our experiences I should write about to commemorate NHS70 – Neonatal Intensive Care, Great Ormond St, Paediatric Intensive Care, the CATS retrieval team, our local hospital and community nursing team, Nascot Lawn, Lennon’s school nursing team, the Children’s Continuing Care team….. the list goes on.

Lennon ‘helping’ to carry his most recent set of notes!

I’ve already shared some of those experiences and I wanted to chose something a little different – a side of the NHS that people maybe do not think about.

Dying.

When we think about the NHS we think of peoples lives being saved, pioneering treatment, miracles. We don’t often see the other side of the NHS, but it is there and we shouldn’t ignore it.

When I think back to the care Lennon received from the NHS throughout his life, the time I think about most is the day he died. I can not fault the care and compassion that Lennon, Ian and myself received in the final few hours of Lennon’s life.

Sleeping post theatre.

I remember the look on the consultants face as the surgeon told us that there was nothing more they could do for Lennon. I’ll never forget the tears rolling down her cheeks when she came in at 3am and removed the ventilator tube that was keeping Lennon alive. It was almost like she could feel our pain. She somehow understood exactly how much Lennon meant to us and how hard we had battled to keep him alive for so long. She knew what we had given up in order for our little soldier to live his life.

I could not fault the nurses that watched over him in his final hours, they were incredibly calm and gentle. They washed and dressed Lennon in clean pyjamas, made sure he was comfortable and kept him alive until we were ready to say our final goodbyes.

They made space in Lennon’s bed for me to get in and hold onto him.

They listened to us and made sure they knew our wishes down to the finest of details. They gave us the space and time that we needed and they understood how much that moment would stay with us for the rest our lives.

After Lennon died, the nurses helped us take foot prints, hand prints, and locks of hair. They let us stay with him as long as we needed to.

They both knew Lennon. One had looked after Lennon when he was first transferred to the children’s ward at Lister aged 6 months. It must of been so hard for her to watch him die. We bumped into her at the end of her shift. Her eyes welled up with tears as she told us she had personally taken Lennon down to the morgue and then rang around to break the news to the professionals involved in Lennon’s care. I can imagine the amount of strength she mustered to do that, just so I didn’t have to.

Sometimes the smallest of gestures have the biggest of impacts.

The staff at Addenbrookes knew I wanted Lennon to be at Keech as soon as possible. I didn’t want him to be alone. They worked tirelessly to make it happen and Lennon arrived at Keech just 12 hours after he had died.

It takes a certain kind of person to care for a dying child and their family.

In the weeks after Lennon died we received letters, cards, flowers and phone calls from all over the NHS. Consultants and surgeons from Great Ormond St and Lister, nurses who had cared for Lennon, therapists who had worked hard with him and seen him flourish and develop over the years. They all took time out from their busy lives to remind us how amazing our son was, how he fought the odds and how they would miss him dearly. None of them had to do that, but they did.

The cards and flowers we received in the days after Lennon died.

It was clear that Lennon’s death had affected many people within the NHS. We all think of doctors and nurses as life savers, and they are. But they also see a sadder side of the NHS and sometimes have to admit defeat and watch their patients die.

Our NHS saves lives, but it also grieves the lives it couldn’t save.

We must not forget the impact that has.

Thank you to the NHS for giving us 10 amazing years with our little soldier Lennon, and for being there when it mattered the most.

We will be eternally grateful ❤️

Mummy, Daddy, Lennon x

Quality not Quantity – Life’s Short.

By the time Lennon turned 2 years old, he had spent the majority of his life in hospital – predominantly in Intensive Care. The short amounts of time we did get to spend at home were fraught with anxiety and worry.

Lennon was oxygen dependent, needed regular suction and was fed into a jejunostomy (a surgical feeding tube placed into his small bowel). His stomach contents drained out into a bag and we needed to calculate these fluid losses in order to replace the lost volumes as Lennon had stage 3 kidney failure.

He required multiple medications throughout the day and night including hormone injections.

He regularly stopped breathing and on occasion, needed me to resuscitate him at home.

Lennon had also been diagnosed as being deaf blind.

Lennon and Isla in Rainforest ward, Great Ormond Street Hospital.

Caring for Lennon was an immense responsibility and at times I felt completely out of my depth – my head bopping continuously above and below the surface of stormy waters.

When he stopped breathing, I found my own breath stuck heavy in my chest.

The pressure was enormous and all consuming.

I love Lennon and I would do anything for him, absolutely anything – nothing was too much.

I gave up my life to look after Lennon and keep him alive. I quit my much loved career, hardly saw my friends and rarely left the house or Lennon’s hospital bed side.

Lennon was admitted to Intensive Care for the fifth time when he 2 years and 1 month old.

He was very poorly. He had a central line infection and bronchiolitis. His bowel had failed on Christmas Eve, just 2 weeks prior, and he was surviving on intravenous nutrition.

His existing diagnoses of renal failure and pan hypopituitarism made providing life support for Lennon complicated. The outlook was bleak and the doctors had asked Lennon’s father, Ian, and I to consider turning off Lennon’s support and ending his difficult and problematic life.

Lennon’s fifth time in Pediatric Intensive Care, Aged 2.

We were both horrified at the very thought of life without our little soldier. I wanted so much more for him. I yearned for him to experience life – joy, excitement and happiness. And I wanted others to experience the elation that came along with Lennon’s achievements, and for him to leave a footprint on the lives of other, just as he had on our lives.

Of course, we said No – Lennon would be one to decide when he no longer had the energy to survive.

And in the moment the word No left my mouth, I made a vow to Lennon, and myself, that his life would be as rich and fulfilled as possible.

Lennon slowly improved and eventually came home – still with a complex and time consuming medical routine. It was then that we were referred to Palliative Care at our nearest children’s hospice, Keech hospice in Luton. Keech’s holistic approach enabled us to care for Lennon at home and keep him there.

I spent the next 8 years researching, planning and booking the most amazing experiences for Lennon, and memories for our family. Yes, he was life limited, in a wheelchair, was deaf blind and had a profound and multiple learning disabilities – but why should that be a reason to stop someone from experiencing a full rainbow of life? Why should he miss out?

We took Lennon swimming at Keech Hospice as much as we possibly could – this was always a mammoth task. Changing Lennon’s dressings, keeping an eye on his dropping blood sugars, and keeping him warm was difficult but his excitement and enthusiasm to be in the water made all the stress of the situation melt away.

Lennon loved to swim, he would of swam everyday if he could of.

We went Ice skating as a family every year on Lennon’s Birthday in December, it became a family tradition. Lennon loved ice skating and the faster the better. One year Ian went so fast he managed to fall over and tip Lennon’s wheelchair backwards into the ice – I was totally horrified and I’m sure my heart missed a beat. Lennon on the other hand, thought the whole experience was hilarious and seemed to be asking Ian to repeat the whole scenario!

Birthday ice skating.

Disney on Ice became a twice yearly event. When it came to Lennon, you couldn’t go wrong with ice skating and Disney together in one venue – two of his most favorite things!

We fundraised and purchased a walking frame and a special bike.

Lennon spent hours toddling around in his walking frame when he was well, and in the summer, we used to stand his walking frame in a paddling pool and he would splash away with such delight.

Playing in the paddling pool.

The bike was incredible – it was a life changer for Lennon. He was a real thrill seeker and was enraptured by speed. Ian would take him for long bike rides, speeding through long, windy country lanes. Lennon flapping his arms and screaming with delight!

Lennon picking Isla up from school on his bike.

I found a company who provided ski lessons to people with a disability. This was a little trickier and took a lot of planning. Lennon’s pan hypopituitarism meant his body disagreed with cold temperatures. But we found ways to work around that. Skiing became a favorite activity for Lennon – the buzz of sweeping down the slopes enraptured him. His face exuded excitement and happiness.

We also took him down the mini slope in a donut ring!

Neither Ian nor I have ever skied, yet our disabled son has.

My little thrill seeker. Lennon loved skiing – the faster the better!

We desperately wanted to take Lennon to Euro Disney – we knew he would love it! But the professionals had forbidden us to leave the country without trained medical support.

Year after year we applied to The Caudwell Children’s yearly trip to Disney Land, Florida – ‘Destination Dreams’. Every year they take 25 children and their families plus a team of 12 doctors and nurses. It solved our problem of needing to travel with medical support. And in 2015 we were selected!

Destination Dreams was the trip of a lifetime. It took months of planning and we travelled with almost 50kg of medical supplies, a file jam packed with medical notes, letters from doctors and emergency plans. But it was oh so worth it!

We stayed in Give Kids the World and visited the parks. I was shocked that so many of the rides had adapted carts for wheelchair users and ecstatic that for one week Lennon did not have to be excluded from anything. My little thrill seeker absolutely loved the rides! The fast and higher, the more he delighted he was. He adored the characters and was mesmerized when we Mickey Mouse in Magic Kingdom. I think the Electric Parade at Magic Kingdom was his highlight. His permanent beaming face on that trip will remain imprinted in my memory forever.

Meeting Princess Elsa. Magic Kingdom, Florida.

Lennon sadly died on 3rd August 2017, in the same Intensive Care Unit that had asked us to turn off his life support eight and a half years earlier. It was Lennon’s time – his exhausted little body had run out of fight. We had been luck enough to of been under palliative care for over 8 years, and therefore we had talked about the final stages of Lennon’s life many times. Palliative care gave us the knowledge to enable us to make educated decisions over time and not have to make quick decisions during the hardest time of our lives. We had always wanted Lennon to die at Keech Hospice, but unfortunately it wasn’t meant to be. The team at Addenbrookes and the lovely staff at Keech worked hard planning, and Lennon made his final journey to the hospice less than 12 hours after he died. He stayed there until his funeral.

We will be eternally grateful for those extra eight and a half years. Eight and half years packed full of joy, excitement and happiness.

Horse riding with school.

And yes, Lennon did make an immeasurable impact on the lives of everyone he came into contact with. He is remembered by many as ‘The boy with the Midas touch’.

Lennon’s fun packed life proves that palliative care is not about giving up, there are always ways to live your life – in the capacity and time that you have – to the maximum.

Playing football with Daddy.

Quality, not Quantity.

One in a Million

Lennon first saw a Geneticist when we was 6 months old and in the Neonatal Intensive Care Unit at Great Ormond St.

Lennon was 12 weeks premature and up until he rapidly deteriorated and became ventilator dependant, aged 5 months, the doctors and nurses involved in his care had all thought his medical problems were a result of being born too soon.

It wasn’t until Lennon’s first admission to GOSH, when many professionals from different specialist teams came to examine him, that it was suggested Lennon most likely had a genetic condition.

Lennon in Intensive Care.

That was just the start of our Genetic journey into finding a diagnosis for our little soldier – and the beginning of my love hate relationship with Google.

Over the first 4 years of Lennon’s life, he underwent every genetic and metabolic test available in the UK. All sorts of diagnosis’ were mentioned over that time – Schinzel Giedion syndrome, Rett syndrome, Mitochondrial disease, Pallister-Killian syndrome, the list goes on.

Lennon had blood samples, DNA, salvia and skin samples, muscle biopsies, bowel biopsies and lumbar punctures taken.

At Great Ormond Street hospital undergoing a round of testing.

I became obsessed. Google was my best friend, yet my worst of enemies.

I rang the Genetics team on a regular basis, pestering anyone who answered the phone for test results.

All the tests came back negative including a DNA micro-array analysis.

Lennon was then put on the DDD study. Over the years we never had any results from it, despite my many information seeking phone calls. When the study finished in June 2017, we were told that Lennon was never signed up because his sample processed as ‘incomplete’ and was never followed up.

Subsequently, we were invited on to the genome 100k project and we had an appointment booked with Lennon’s Geneticist at GOSH for October 2017, for myself, Ian and Lennon to provide DNA samples and sign up. But Lennon died in August, just missing out on that appointment.

My quest to find a diagnosis for Lennon was beginning to consume my life.

Until one day when I sat down and really thought about it. What would a diagnosis change? What would a diagnosis mean? How would a diagnosis change Lennon’s life and how we help him to live it?

I slowly came to the conclusion that a diagnosis was just a word. A word that would explain the wonder of Lennon. Just one word to write on forms and tell people.

But that was all.

That one word wouldn’t change Lennon and it wouldn’t change how we looked after Lennon – nothing would be any different.

Enjoying the FunFair.

I began to forget about a diagnosis and focused my energies on researching, planning and booking the most amazing experiences for Lennon, and memories for our family.

Yes, he was undiagnosed and no one really knew what the future really had in store him.

Yes, Lennon was in a wheelchair, was deaf blind and had a profound and multiple learning disabilities and complex medical needs, but why should any of those factors be a reason to stop someone from experiencing a full rainbow of life? Why should Lennon miss out on living a full life?

We took Lennon swimming as much as we possibly could – this was always a mammoth task. Changing Lennon’s dressings, keeping an eye on his dropping blood sugars, and keeping him warm was difficult but his excitement and enthusiasm to be in the water made all the stress of the situation melt away.

We went Ice skating as a family every year on Lennon’s Birthday in December, it became a family tradition. Lennon loved ice skating and roller skating – the faster the better!

Speeding around the rink at Rollercity.

We fundraised and purchased a walking frame and a special bike.

Lennon spent hours toddling around in his walking frame when he was well, and in the summer, we used to stand his walking frame in a paddling pool and he would splash away with such delight.

Splashing in the paddling pool.

The bike was incredible – it was a life changer for Lennon. He was a real thrill seeker and was enraptured by speed. Ian would take him for long bike rides, speeding through long, windy country lanes. Lennon flapping his arms and screaming with delight!

Lennon thoroughly enjoyed his bike.

I found a company who provided ski lessons to people with a disability. This was a little trickier and took a lot of planning. Lennon’s pan hypopituitarism meant his body disagreed with cold temperatures. But we found ways to work around that. Skiing became a favorite activity for Lennon – the buzz of sweeping down the slopes enraptured him. His face exuded excitement and happiness.

We also took him down the mini slope in a donut ring!

Neither Ian nor I have ever skied, yet our disabled son has.

One of Lennon’s favourite activities. 

We will be eternally grateful for the 10 and a half years we had with Lennon. A short life, but most certainly a life packed full of joy, excitement and happiness. And Lennon’s full life serves as a reminder that no matter what your disability or diagnosis, there are always ways to live your life – in the capacity you have – to the maximum.

Horse riding with school.

A few weeks ago I spoke to the Genetics team at GOSH. They informed me that they had stored various samples of Lennon’s – including his DNA, meaning that Lennon can still join the genome 100k protect. Ian and I have an appointment in March to provide our own DNA to be submitted alongside Lennon’s and to sign the forms.

And so the quest for Lennon’s diagnosis continues. Lennon truly was one in a million, and I’m certain when someone eventually finds a diagnosis for Lennon it will be extremely rare!

Our family of 5 x

First Christmas

Christmas Eve 11 years ago – The first time I held my baby boy. He was 19 days old. In a hospital across the other side of London and we were still unsure if he would survive.

The pain I felt then was incredible.

All I wanted for Christmas was to hold my baby and to bring him home. For him to survive and experience a life outside of his Perspex box, monitors, tubes and needles.

Ian and I holding Lennon for the first time in NICU Chelsea and Westminster.

It is nothing compared to the pain I am feeling now. Facing my first Christmas without my first born child.

All I want for Christmas is Lennon. To see his face beaming at the sights of Christmas lights, feel

his hands slap me on the back as he watches his sisters getting excited for Santa and to watch him throwing spoons across the table while we eat Christmas dinner.

Enjoying the Christmas displays at Van Hages.
Christmas Day 2016.

In the run up to Christmas, every year my thoughts are consumed by our time spent at Chelsea and Westminster. Sitting over Lennon’s Perspex box, the monitors flashing and singing. Walking up and down the Fulham Road in between the tube station and the hospital, day after day. Christmas lights and charming decorations everywhere.

The shops full of gifts, and passers by full of Christmas cheer. The gigantic Christmas tree in the hospital lobby.

And me.

Entering the hospital with promise for the day ahead. Thoughts that today would be the day my baby would turn this around.

Leaving the hospital in a cloud of dark and sadness, reliving the awful events of each day.

Ever since Lennon’s birthday I have had an urge to return to Chelsea and Westminster. To retake my steps and see Christmas on the Fulham road.

Why? Because I am looking for something. I don’t know what. Maybe memories. But why am I looking for sad memories and not happy ones?

Christmas 2009.
Visiting Santa at Nene Valley Railway, 2011.
Christmas Day 2014.

Maybe because I have been consumed by sadness since Lennon died. There are glimmers of happiness there, occasionally. I try to hold on tightly to them, but they slip through my fingers so very quickly.

If I could hide in bed for the next few days, believe me I would. But I won’t – my girls need me. Ian needs me. My girls deserve to have the most fantastic Christmas and to know that their brother will be looking down on them, expecting them to be enjoying every second of Christmas. For themselves, and for him.

Christmas 2016.

He will be the sparkle in their eyes while they are opening presents, playing games and spreading joy.

I’ll look for that sparkle and hold on to it tightly.

Magic Kingdom, Florida, December 2015.

Forever 10 years old

Dear Lennon,

Today is your 11th Birthday – The first time we will celebrate your Birthday without you.

I haven’t ordered the balloons that you loved, or the fabulous Yo Gabba Gabba cakes that you could never even taste.

I haven’t been out to the shops and collected a plethora of catalogues for you to flick your way through.

I haven’t got your big birthday badge and the lights we decorated your wheelchair with.

Lennon spent his 9th birthday at Universal Studios in Florida!

We celebrated each one of your Birthdays as if they would be your last. Just incase.

I’m so glad we did.

You never really understood Birthdays – but year after year, as you grew older, I think you got used to knowing it was ‘your’ day. A day that was specially made for you.

Lennon’s Day.

We kept the day the same every year, in hope that the routine would let you know it was your Birthday.

We would send you off to school on the bus – with your huge birthday badge, lights and balloons. Just to ensure that everyone at school made a big fuss of you!

Lennon’s 7th Birthday.

You would wear the fabulous birthday cake hat at school and your friends would sing you a ‘Happy Birthday’ in assembly.

You loved assembly’s, and you most certainly loved being fussed over.

We would collect you from school. I’m sure at this point you would know what was happening next – We would take you to Van Hages and Ice skate for your birthday treat.

You loved Ice Skating. I can picture your face whilst sliding across the ice in your wheelchair, your wide eyes, big beaming smile and flapping arms.

Ice Skating on Lennon’s 10th Birthday.
Ice Skating on Lennon’s 6th Birthday.

One year Daddy fell whilst pushing you and your wheelchair flipped backwards onto the ice. My heart skipped a beat, worried you were hurt. We picked your chair up and all the while you were laughing so hard you could barely catch your breath – You wanted to do it all over again!

Always the thrill seeker.

We would walk around Van Hages admiring the decadent Christmas decorations and lights. Every year you and your sisters would each chose a decoration for our tree.

We would go home, light your birthday candles and sing you Happy Birthday. You were never able to blow out your candles yourself, but you always displayed great delight in watching your sisters blow them out for you.

Once you were in bed, Daddy and I would reminisce about the day you were born and wonder how on earth you survived.

Lennon’s 1st Birthday party.

With each year that passed, we grew prouder of your fight for survival and we felt so incredibly lucky to of celebrated yet another birthday with you.

I treasured your Birthdays like gold dust. Each one more precious than the last.

Lennon’s 9th Birthday in Florida – By far his most magical birthday!

Last year we went all out for your 10th Birthday.

10 whole years with you.

We considered you reaching 10 the most amazing achievement!

Singing Happy Birthday.

We threw you a massive party – a UV disco. You loved ultra violet lights! So many people came to celebrate with you.

My only regret was that you were poorly. Your colon had failed by that point and you were in so much pain. I wish so much for you to of enjoyed your very last Birthday with us.

Before the big ’10’ party.

Today, I will make you a birthday cake and your sisters will blow out your candles.

Today, I will blow up your balloons, we will write you messages and send them to the sky for you.

Tonight, we will go Ice Skating for you, like we always did on your Birthday.

When Daddy falls over we know you will be laughing with us.

Today, like every other day since you died, I will think of you and wonder where you are. Wonder whether or not you are happy and pain free now. Able to celebrate your special day.

Lennon’s day.

Mummy and Lennon on his 10th Birthday x

December 3rd, 4 months.

On the 3rd of December it will be 4 months since Lennon died.

17 weeks since I last saw his ocean blue eyes wide open.

121 days since his little body grew too tired to carry on fighting.

My gorgeous boy.

I want to be able to tell you that the pain has lessened slightly, but it hasn’t.

It’s still there.

It smacks me in the chest when I awake every morning. It still hurts, but the pain is becoming familiar.

Some days I feel like I’m drowning in pain, my body feels heavy and my head foggy.

Some days I feel ok.

There are rare days when I feel good. Not happy, good – I can’t imagine feeling real, true happiness ever again.

Our home is quiet and bare.

No nurses or carers in and out at all times of the day.

No school bus.

No deliveries.

No mad drugs runs to various collection points.

And the phone barely rings anymore.

They came and took away Lennon’s bed. The magnitude of this was immense – not only is there now a gapping space in Lennon’s room where his bed stood, but there is also the cold fact that now Lennon has nowhere to sleep in our home. He is definitely not coming back.

Florence cried for days. She was always very aware of the fact Lennon could only sleep in his bed. Now his bed is gone, and that means he cant sleep here anymore – he is never coming home.

I gave away Lennon’s bike to another family – a little boy similar to Lennon. I hope him and his family experience as much joy from it as Lennon did.

His walking frame, medical ancillaries and special milk feed were shipped to a children’s home in Zimbabwe.

Escaping from respite! 

The sympathy cards came down.

I found the empty spaces in our home unbearable. I brought a coffee table for our living room to fill the gap where Lennon sat in his wheelchair to watch television.

Lennon’s clothes are still in his drawers, untouched. His drawers are still in his bedroom. It is still Lennon’s bedroom – It will always be his bedroom.

Ian and I went back to Great Ormond St to see Lennon’s surgeon, gastroenterologist and his complex care nurse. To say goodbye and to thank them for playing such a significant part in the 10 years of Lennon’s life.

But also to settle our minds – would the outcome of been different if Lennon had of been transferred to GOS instead of Addenbrookes? Would Lennon of had a better chance of surviving if he had of got to theatre any quicker? Would the outcome of been different if it was Lennon’s surgeon who performed that last chance surgery? – The surgeon who often joked he knew Lennon’s inside better than his outside.

The ‘what if’s’ in my head had gained momentum as the weeks passed – Lennon’s surgeon thwarted them in their tracks.

Lennon’s heart had stopped beating less than 12 hours after he became unwell – the sepsis had already taken over his little body.

Lennon’s surgeon had read the theatre notes from Addenbrookes – the surgeon had written that they were astounded Lennon was still alive considering the entanglement the saw in his small bowel. It was apparent that It didn’t matter who performed the surgery or when he got to theatre – Lennon’s small bowel was beyond saving.

Ian and I left in tears.

We walked around the City for hours. Talking, crying and remembering. I drank too much.

It was heartbreaking to go back and have to hear what we did. But I needed to hear it from the man who knew my little soldiers bowel better than anyone. The ‘what if’s’ have vacated my head.

As well as campaigning to save Lennon’s beloved respite centre, I have been doing small amounts of work here and there. I am enjoying it, and very slowly I’m beginning to find myself again. Build myself a new life. It’s hard – I loved my old life, I enjoyed being a part of the special club I was in. I loved caring for Lennon and I made it my purpose in life to make sure he best quality of life possible. Now I’ve been kicked out and pushed into a new club – The Bereaved Mum club – A club I didn’t chose or want, but I suddenly ended up in.

One thing I do know is that Lennon put me on a path. A very different path from where my life was heading. He took me on a journey, gave me an experience that not many people get from life. I need to carry on down that same path and use the knowledge and expertise that Lennon taught me to help change the system for other families.

December the 3rd – 4 months since Lennon died.

My birthday.

Mummy and Lennon x